The IACC reconvenes

Due to the Combating Autism reauthorization delays, the IACC met again this past week on July 10, 2012. Over one year has passed since their last meeting.

Who is the IACC? (1) The IACC is described as follows:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.

IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

As a parent, I have listened in to the IACC meetings, not every meeting, but most that have occurred. The good intentions appear to be the same. What is missing is a sense of urgency in addition AND a list of actionables or goals.

While I appreciate the efforts, not much has changed since my son Jeff was diagnosed in 1999, and that’s horrific. Since TACA started 12 years ago, we have been helping newly diagnosed and existing families living with autism. We now have more people affected and fewer resources. We appear to be going backwards, not forward. In 1999, a song was really popular by the artist PRINCE – PARTY LIKE IT’S 1999! Maybe the people in this committee need a new play list because I am tired of “partying like it’s 1999”; our kids deserve some answers and progress towards treatments.

One of the IACC July attendees was a dad named Mike Strautmanis. He has been an advisor to President Obama since he was a Senator. At the meeting, he shared some pretty personal information. His son Jake is now 15 years old. He started helping with autism efforts in DC when his child was only 4. Today, his son no longer lives with the family full-time due to being potential danger to his family and to himself. This is a sad reality for some families that are living with autism.

As I listened to his words, I couldn’t help but draw a parallel to my son Jeff, the same age and diagnosis as Jake. I started to cry. Mike’s family deserved more answers and support. Autism can be a debilitating diagnosis with severe consequences. Where is the sense of urgency for Jake’s family?

Other topics discussed included:

– The annual cost of autism

– Autism Health Insurance Reform (now in 32 states – 4)

– Seizures

– Access to services

– The state of autism science

Also in attendance were Combating Autism Act original bill authors: Senators Chris Smith and Mike Doyle. They have been committed to the autism cause since the early 1990’s when prevalence affected 3 in every 10,000 children versus the 1 in 88 today. They indicated they were authoring new legislation to require diversification of the IACC with additional members of the public. I love and support this idea. If we are in for six more years of the slim previous accomplishments, we have a big problem.

What was the most disheartening of the day was that the agenda was “packed” and because time ran out, so did the possibility of the scheduled agenda time of public comments. This cannot happen again. Public comment must always be part of the agenda. IACC needs to be held accountable by the public and listen to the voices of the families they were formed to serve.

As expected, original IACC member and friend Lyn Redwood spoke eloquently. She has always acted with the best intentions offering a similar opinion on many issues as my own. She indicated that “most of the individuals with autism are under the age of 18. What happens to these children when their parents can no longer care for them? We are not prepared for this.”

Somehow this sobering question did not seem to get the attention of the rest of the IACC members. I do know that being on a conference call doesn’t allow for facial expressions or concerns, but I simply heard none. I hope I am wrong.

To put things in perspective, Mike Strautmanis closed his comments with this statement to the IACC “We need the best of you.” I agree, we do! And sadly, if the July 10th meeting was their best, I have reason to be concerned.

Families living with autism need to review these meetings and come to their own conclusions. Does this group motivate them to believe that answers will be found for their beloved children? Families need to become a part of this process. The future of what happens concerning autism depends on parent involvement. If you are reading this and are not plugged in – it is time for you to plug into what is going on at the IACC.

Does the IACC know your concerns for your family? If not, it is time to you let them know immediately because precious time is quickly passing by and our kids aren’t getting any younger.

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Thank you for putting this information out there, since most of us will never be able to attend a meeting. I wish the government would treat this like the national emergency it is and get some answers. There is a tsunami of kids who will age out of the school system and will become society’s burden if we don’t find ways to help these kids and their families.

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